I'm out of sorts

Hannah is a Junior Girl Scout. Before we moved to the Richmond area she was in a great Brownie Troop. I didn't realize how good it was until she joined a troop here. It took us a year to find a troop that was accepting Scouts. So Hannah joined in January.

It's an odd conglomeration of troops--there are about 4 or 5 Juniors, 3-4 Cadettes, and a few seniors. There are many troop leaders, all of whom are apparently very close. I made the decision not to get too involved with Hannah's group because I want her to have the chance to be more independent. She's with me more than enough, and we both can use some time apart. I stay at the church where they meet, but I go read in another room, or find something helpful to do that isn't interfering with her group. I discussed Hannah's abilities and challenges with the troop leader, and felt that she understood that Hannah should, and could, be fully included in activities. Of course I offered to help if she needed it, but explained that I was hoping to let Hannah chart her own course in the troop.

In 4 months, I think that the Juniors have worked on part of one badge. The rest of the time they spend helping the older girls with their endeavors, which seem to be crafts for Tea Parties. This troop likes to invite Brownie and Daisy troops to Tea Parties. They spend several meetings making crafts (painting pine cones into flowers...?? Making Japanese fans and origami? For three or four meetings in a row?). Then there is the actual tea party, where 20-30 little girls come to learn etiquette and gorge themselves on all kinds of food which the troop supplies. They never have any kind of opening or closing ceremony at any meeting. They never do any kind of flag ceremony, or any "Girl Scout-y" things.

This is all fine, I suppose, but it isn't what we were expecting from Girl Scouts. The scouts and leaders are welcoming enough. But they just don't get it. Hannah wants to be a part of the group. She wants to contribute. For the first Tea Party, Hannah arrived in her "hostess" clothes, as requested. However, she never got to do anything. They ended up telling her to go sit with the Daisies and Brownies.

I wasn't happy with that (Hannah is as tall as an average 12-13 year old--and she was 10), she doesn't need to be with 5-7 year olds. I'm not at all about appearances, but really, it doesn't work to put the only kid with a disability in with the little kids. I could tell she felt awkward, not only because she was the only one who was dressed to "work", but because she didn't know anyone at the table and she was so big. But the main point is, she wasn't included in her troop.

I let that one slide. But when I learned that they were planning another tea party, I repeatedly requested ways for Hannah to participate--certainly she can serve snacks and pour tea. Certainly she can bake goodies and bring them, just like her troopmates. The leaders promised to email me or call me with assignments. And even when I emailed them, two weeks ago, I got nothing other than, "Oh, don't worry, we have everything we need." The Tea Party was tonight. I got my first phone message at 4 p.m., saying that Hannah could bring some rice if she wanted (???rice??). I decided that Hannah didn't want to bring rice (who brings rice to a tea party?)--We didn't have time to fix anything appropriate, so she went empty-handed. It was not a problem--there was a big spread of treats (and no rice).

When we arrived this evening, they whisked Hannah down the hall--I assumed to have her get to her post. She did help check in the party guests. I stayed around for a while, but I needed to run an errand. When I came back, I was surprised that Hannah was, again, a guest at the tea party. She had her back to me, so I could observe the situation without having to reveal myself. Ugh. They were so patronizing to her. Everyone was treating her as if she was five years old. It made my stomach drop.

When we started the IEP process when Hannah was 3, we made up a list of Hannah's strengths and weaknesses. One of the threats to Hannah's development we listed was "The low expectations of others."

While we've had small instances of low expectations, with a particular Sunday School teacher, or an occasional incident with a store clerk or neighbor, this is the first time I can think of an entire group of people I know negating Hannah's abilities. And it pisses me off. And I hurt for her.

When she was first born, of course I convinced myself that we'd have the brightest and best child with Down syndrome ever. Over the years, we've gotten off our high horse and re-tooled our expectations to have the brightest and best Hannah ever. Boy do we love her!

Nobody wishes pain on their children. I remember, in those early years, deliberating...would it be easier for Hannah to not know that she's different? If she didn't have the ability to understand her disAbility, would she be happier? If she's aware enough to know about how she's different, how and why it's hard for her to learn, aware enough to understand taunts and teases and cruelty, is that a good thing? It is, if we want her to be competent enough to live independently. So, of course, to be the Best Hannah, we have to expose her to the pain.

As I kissed her good night, I asked her if she liked being a guest at the tea party, or would she rather have worked at the tea party. She said that she'd like to have done both. She cried a little. She's no dummy. She knows what is going on.

I don't know where this leaves us. I think we'll probably have to stick it out until the end of this school year. Hannah's not going to want to quit. And I'll have to try to negotiate my way through the clique of leaders and make them understand they need to give her a chance. I'd rather just quit. But that doesn't do anyone any good.

As I've been writing this, I've been feeling as if I'm not quit able to fully tell the story. I wasn't sure where I was going with this post, other than to vent. And I'm not sure I'm saying anything of value, or that I've said what I wanted to say. I've let it sit overnight, and I'm still not sure whether I should post it "as is", or let it simmer a little. But, onto the blog it goes--I've got go out of town for the day, so no time to wallow.

Thanks for letting me have my own little pity party.